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An Update on Patrick Volkerding
Noryungi writes "Patrick Volkerding, the maintainer of Slackware Linux has posted an update on his health problems on the ChangeLog of Slackware-Current. Unfortunately, it seems his health is getting worse and not better... Again, if you know some specialist in viral infections, contact Patrick ASAP. Hang in there, Pat!" Our original story.
This man is very intelligent, and does his job very well.
Unfortunately, these advantages can quickly turn into a liability. In the same way that a doctor may end up losing his shirt when he starts daytrading, experience and competence in one area does not necessarily translate to the next. Confidence however, generally does.
He's frequently using medical terms in very poor "context" for lack of a better expression. While technically appropriate, it ends up reading more like an essay written by someone who used a thesaurus too often without knowing exactly what the words mean.
He has been to many doctors, and all of them have found little to nothing wrong. This is drastically different from his own assessment of looming death. Statistically, from the number and variety of doctors he's visited, a false negative at this point is incredibly unlikely. As the saying goes, when everyone else is wrong, you're probably wrong yourself.
Yes, it is important to verify information and diagnoses given to you. But it isn't critical evaluation to assume a conclusion from day one, and stick to it regardless of multiple, consistent, informed opinion.
But then again, if he ends up dying from some bizarre rare disease, I'm going to feel pretty bad about this post.
I've noticed that in the last few years (maybe it's just my perspective, I don't know) doctors seem less and less likely to actually listen to their patients. I have recurring tonsilitis that I get at least once a year and usually more. I have been going through this since I was 6, when the doctors refused to take my tonsils out even though my mother wanted them to. Now the blood vessels are too big to make it a safe operation. Anyhow, I know what needs to be done and what I am suffering from, as I've been dealing with this for 23 years. However, I find that I have to make appointments with 3 or 4 doctors before I find one that listens to me at all. The others will go 'uh huh, uh huh, yeah, uh huh.' Then they give me some test for strep throat or send me away with a low dose of penicillin or something else that doesn't help me get better. Why is it that even if we use technical terms, doctors won't listen? Mr. Volkerding clearly at least has *some* idea of what he's talking about, and I find it sickening that his doctors are paying so little attention to what he says. I don't even like it when it happens to me with a much less serious condition, I can't even imagine the frustration I would feel were I seriously ill and my doctor treated me with that much contempt. Health care costs keep rising, doctors keep leaving the high litigation states, and the ones who are left don't listen to (or even seem to care about) their patients... This is a serious problem that needs a solution fast.
http://xkcd.com/386/
For what it's worth I spent 12 years in psych treatment, under the care of docs and on various antidepressants and psych drugs because my constantly low energy levels were put down to depression. I felt like shit, the world felt like shit, and it was all put down to me not wanting to take part in life.
Then my GP retired, I picked up a new one who gave me a going over, and it took him 5 minutes to diagnose a chronic low level tonsil infection. You have no idea how good it's felt since I had those fuckers out. 12 goddamned wasted years because doctors couldn't be bothered with the simple things.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi
My daughter has a heart condition and we found the doctors weren't interested in really discussing anything until we started using the "right" terminology. The terminology I picked up after reading a number of PubMed publications about my daugher's condition.
I highly suggest that anyone researching any condition (but especially something exotic like Patrick) hit PubMed. Make it your source you cite when talking to your docs. Make it your primary source of information. All the other websites you read are just summing up the papers published here.
Agile Artisans
I've been in your situation before with a stomach problem. You're breaking the system!
Doctor's diagnose by a flow chart the same way programmers debug a program. Given a symptom x and y, localize where the problem could be and its causes and try a solution. But unlike programmers, they don't try various solutions, rebuild and retest... Solutions in medical practice take time or can't happen at all at which point the problem has to be mediated to get on with the quality of life(ie hacked).
The problem is that everytime you switch to a new doctor two things are happening. First, the new doctor is going to start from the top of the flowchart and work his way down to the first matching diagnosis and treat that. Even if you say that was checked and the problem is different, you're the pleeb, he's the doctor and unless he gets scientific proof otherwise, his opinion is the right one. Basically, unless you have every medical test result you have, on official paper, your opinion means squat. Secondly, you're retaining all this knowledge and experience so when you present your case to the new doctor you're coming off as: "I went to this doctor with chest pains, but he didn't see anything wrong and I have this other ache which I think is related, so I went to this other doctor who says the other ache is this unrelated problem, but meanwhile I've gained a third symptom of popping in my chest so I went to the emergency room but they didn't think anything of it, so I went to the internet and printed out these charts and I think I have a rare and exotic problem, what do you think?"
Well the new Doctor is now going to think "hypochondriac" and not take your opinion very seriously becaue you've disregarded other medical opinions.
Basically you've got to find ONE doctor that you trust, present your symptoms and then work with that doctor through the multitude of tests to come to a conclusion. A good doctor is a> smart, b> will listen to your case history and c> (and most importantly) will interact with you and answer your questions to alleviate your fears.
Two anecdotes here: Both Michael Eisner and David Letterman had family histories of father's dying early from heart attacks. Both men's doctors ran the usual EKG's and stress tests and found no heart troubles. Both men continued to push for better testing and finally their doctors relented and did an dye test on the heart and found major clogging in the arteries with NO other symptoms present.
On the flip side, a relative of mine had chest pains, stomach pains and pains on his upper left abdomen. After several heart tests, his doctor diagnosed acid-reflux and proscribed one of the common pills for it. After about a month, the pain was less but he still had it. So he went back to the same doctor who tested his heart again, no problem. But my uncle was sure that something else was up, so he went through a chest x-ray, clear. So then they ran some blood tests, clear. So then they ran a lower GI test by ramming a camera up his butt, clear. Gall bladder, clear. Finally, they dropped a camera down his stomach...and found something. Acid Reflux damage. My relative had stopped taking the medication because he thought it wasn't doing anything. So the doctor put him back on it and made him stay on it. Two months later, the pain had cleared.
What you're feeling is real to you. I sympathize with what you're going through and urge you to keep up the fight. But you've got to work WITH the system.
As you say, you're an MD, which gives you a different perspective on health care. For example, you know many MDs personally and indirectly through them have a network to many other MDs. Don't you doctor shop too, to find the best person you know? The rest of us don't know any MDs personally, so to find the best doctor, all we have are recommendations from friends who aren't MDs, which are sometimes useful, but generally we actually have to go in for a visit to see how good someone is.
Also, how long will your doctor see you for? The typical visit time for my HMO is 2 minutes, and I've never personally been able to keep a doctor in the room for 5 minutes, even when it took longer than that span to explain my problem.
I've been in Patrick's position, having a chronic condition where I went through over a dozen doctors who were completely useless. All the doctors seemed to have the same set of flowcharts for diagnosing me and never listened to what I said. Each GP did the same tests, sent me to the same types of specialists, and gave up at about the same time. They were like bad help desk personnel reading from the same script.
Fortunately, I met someone with the same problem and went to her doctor (that she'd found through a multi-year search like the one I had been doing). Her doctor was outside my HMO and quite expensive as a result, but well worth the cost as he spent the time to talk with me and learn my medical history, diagnosed the problem correctly, and prescribed a successful set of treatments.
Perhaps you would know the right person to go to immediately, but most of the rest of us are trapped in the HMO system without your connections to find the right person or to convince most MDs to spend more than a couple minutes with us.
Patrick's unfortunate plight is not all that surprising to me. I lived for 27 years with two undiagnosed major medical problems, despite scores of visits to doctors and ERs.
Years of unexplained nausea & abdominal pain, weak immunity, mysterious pains that roamed randomly over my body, recurring flu-like symptoms, joint and muscle pain, headaches etc. I was called everything.. hypochondriac, liar, quitter, faker etc. So many specialists, tests, and so on, that I can't even count them all.
Finally, on yet another desperate 3am ER visit, my then-wife demanded that they look until they find something to explain all of this. Some bright ER intern plops an ultrasound on my belly (no, none of the many other "medical professionals" had ever bothered to do this..). The discussion went like this:
Intern: Do you have any history of kidney disease?
Me: No..
Intern: You do now!
24 hours later, I was diagnosed with PROFOUNDLY ADVANCED Polycystic Kidney Disease. My kidneys were so enlarged that they were squashing all of my other organs out of place. This hadn't happend overnight; it was with me all of my life, slowly getting worse every year. Once they had the kidneys figured out, it wasn't long until they had the Fibromyalgic illness / chronic fatigue diagnosed as well. Needless to say, after 27 years of suffering, I was less than totally impressed with the medical profession.
In short, the system sometimes fails.. and when it does, it can be a real doozy. Hang in there Pat, every illness has a cause, and yours will surely be found. Blessed be.
There's a Starman, waiting in the sky / He'd like to come and meet us, but he hasn't got the time.
I second this. See my previous posts in this regard. A mitral valve prolapse in itself in unspecific. However, some signs noted here (and there I politely disagree with the parent post) MAY point in the direction of bacterial endocarditis. One can have that without elevated ESR. CRP should be elevated too. The way to diagnose this is cardiac ultrasound and multiple blood cultures taken when running a fever of more than 38.5 deg centigrade. That said, I agree with the parent in the red flag department. The self-diagnosis and doctor-hopping don't help. As noted in the previous Patrick Volkerding thread, he should stick with one doctor and let him/her check things out. If no abnormalities are found, the chance of there being a new rare disease is small. I know, because I have indentified several rare "new" diseases myself. Take my word for it: that is non-trivial and requires much double- and triple-checking. I'm worried, too. Meanwhile, my best wishes for a speedy resolution.
----- One learns to itch where one can scratch.
I actually had a much different experience, but it was at a children's hospital that was also used for training. The doctors there worked with us (the parents), as if we were part of their team. There were at least a dozen doctors, and each of them would walk us through test results, and didn't ignore the "what about {n}?" questions, to the point that new tests were ordered when things appeared to be missing.
As the doctors were baffled by his condition, they were open to our suggestions and ideas. We were even able to review his chart (and ask questions) whenever we wanted (which is a lot different than most adult-hospitals I've been to).
What impressed me was the huge set of possibilities that the doctors had to consider in their decision tree. Minute facts about our son's case would shift the tree significantly, and the doctors were able to handle this large data set (and the changes) with ease. Their domain is many times more complex than software development, based on the size of the data, the quality of tools, and the integrity of the data logging (people tell many stories). Even better, these doctors were able to make me feel like an equal in a very difficult situation. That in itself is a hard problem.
Over the course of our son's time in the hospital, his condition was characterized in 3 ways. The first two didn't sit well with us, as we had experienced his episodes (heart attacks) first-hand. The doctors trusted us that the diagnosis didn't seem to fit the experience, and they persisted in asking us questions, and analysing the test results until something fit. It was amazing.
I've had other hospital experiences that were much worse, but the good ones are out there.
mx
You describe a major problem in medicine today... I call it the "acute care" syndrome.
People get sick (usually with a viral illness), they go to the doctor and want a quick fix. The doctor is given two choices...
1. "It's a virus." No antibotic and educate the patient as much as possible.
2. "It's an 'infection'" and get the patient out with an antibotic.
So if doctors do the right thing and do #1, then the patients are unhappy. Doctors get tired of fighting for no reason and get bitter. This happens everyday in every "acute care" center in the US.
Now think of this in relation other common diseases that doctors can't fix. They can either prescribe different medications or they can try to educate the patient.
The only time education is appreciated and believed is when it comes from a physician that you know and trust. But who has a doctor (dentist, lawyer, mechanic, etc.) that they personally know anymore?
Yeah, it's sad for us too...
Hear, hear.
I once got sick enough where I thought I was paying for my sins before I died. I got on the Internet to see what my problem was, and had myself convinced that I had acute pancreatitis.
So I went to the doctor, with a semi-knowledge of acute pancreatitis, and described some of the symptoms I had read about. What was the result? Well, the doctor thought I might have acute pancreatitis. We did a rather expensive battery of tests to check for pancreatitis, kidney stones, gallstones, etc. etc. Nothing turned up.
By that evening I felt fine. It turned out to be some simple gastritis (probably due to some NSAIDs I was taking - without doctor supervision - for my tendonitis).
I sent myself to the ER because I tried diagnosing my own problem. I was fine, but I had to pay the price. It ain't cheap.